Show simple item record

dc.contributor.authorChang, Anne B
dc.contributor.authorBoyd, Jeanette
dc.contributor.authorBell, Leanne
dc.contributor.authorGoyal, Vikas
dc.contributor.authorMasters, I Brent
dc.contributor.authorPowell, Zena
dc.contributor.authorWilson, Christine
dc.contributor.authorZacharasiewicz, Angela
dc.contributor.authorAlexopoulou, Efthymia
dc.contributor.authorBush, Andrew
dc.contributor.authorChalmers, James D
dc.contributor.authorFortescue, Rebecca
dc.contributor.authorHill, Adam T
dc.contributor.authorGrimwood, Keith
dc.contributor.authoret al.
dc.date.accessioned2021-08-04T04:32:38Z
dc.date.available2021-08-04T04:32:38Z
dc.date.issued2021
dc.identifier.issn2312-0541
dc.identifier.doi10.1183/23120541.00122-2021
dc.identifier.urihttp://hdl.handle.net/10072/406578
dc.description.abstractThe global burden of children and young people (CYP) with bronchiectasis is being recognised increasingly. They experience a poor quality of life and recurrent respiratory exacerbations requiring additional treatment, including hospitalisation. However, there are no published data on patient-driven clinical needs and/or research priorities for paediatric bronchiectasis. Parent/patient-driven views are required to understand the clinical needs and research priorities to inform changes that benefit CYP with bronchiectasis and reduce their disease burden. The European Lung Foundation and the European Respiratory Society Task Force for paediatric bronchiectasis created an international roadmap of clinical and research priorities to guide, and as an extension of, the clinical practice guideline. This roadmap was based on two global web-based surveys. The first survey (10 languages) was completed by 225 respondents (parents of CYP with bronchiectasis and adults with bronchiectasis diagnosed in childhood) from 21 countries. The parent/patient survey encompassed both clinical and research priorities. The second survey, completed by 258 health practitioners from 54 countries, was limited to research priorities. The two highest clinical needs expressed by parents/patients were: having an action management plan for flare-ups/exacerbations and access to physiotherapists. The two highest health practitioners' research priorities related to eradication of airway pathogens and optimal airway clearance techniques. Based on both surveys, the top 10 research priorities were derived, and unanimous consensus statements were formulated from these priorities. This document addresses parents'/patients' clinical and research priorities from both the parents'/patients' and clinicians' perspectives and will help guide research and clinical efforts to improve the lives of people with bronchiectasis.
dc.description.peerreviewedYes
dc.languageeng
dc.publisherEuropean Respiratory Society (ERS)
dc.relation.ispartofpagefrom00122-2021
dc.relation.ispartofissue3
dc.relation.ispartofjournalERJ Open Research
dc.relation.ispartofvolume7
dc.subject.fieldofresearchCardiovascular medicine and haematology
dc.subject.fieldofresearchClinical sciences
dc.subject.fieldofresearchcode3201
dc.subject.fieldofresearchcode3202
dc.titleClinical and research priorities for children and young people with bronchiectasis: an international roadmap
dc.typeJournal article
dc.type.descriptionC1 - Articles
dcterms.bibliographicCitationChang, AB; Boyd, J; Bell, L; Goyal, V; Masters, IB; Powell, Z; Wilson, C; Zacharasiewicz, A; Alexopoulou, E; Bush, A; Chalmers, JD; Fortescue, R; Hill, AT; Grimwood, K; et al., Clinical and research priorities for children and young people with bronchiectasis: an international roadmap, ERJ Open Research, 2021, 7 (3), pp. 00122-2021
dcterms.dateAccepted2021-04-20
dcterms.licensehttp://creativecommons.org/licenses/by-nd/4.0/
dc.date.updated2021-08-02T23:45:32Z
dc.description.versionVersion of Record (VoR)
gro.rights.copyright© The authors 2021. This version is distributed under the terms of the Creative Commons Attribution Non- Commercial Licence 4.0. For commercial reproduction rights and permissions contact permissions@ersnet.org.
gro.hasfulltextFull Text
gro.griffith.authorGrimwood, Keith


Files in this item

This item appears in the following Collection(s)

  • Journal articles
    Contains articles published by Griffith authors in scholarly journals.

Show simple item record